The school space with Charlie's name on....

This blog post was written on 3/3/2020

So today I went to view HH (again) initially I went to view this school in May last year, and we were rejected and told the school could not meet need. There was also quite a bad Ofsted report written “requires improvement” so I was sat on the fence with that one anyway. They have a space now for Charlie. However, there are many holes in the LA idea for this placement.

1) Distance - it is over an hour’s drive in the mornings, a drive I will have to do as Charlie is unable to travel in the mornings in a taxi due to high anxiety and separation anxiety.

2) Transition - the school only goes up to Year 9. This means there will be an EHCP rewrite at Year 6 to transition to Year 7, then another one in Year 8 to transition to Year 10, depending on which pathway he will be on will ultimately depend on when it is written. We are 6 months away from Year 4 and as of yet do not have a final plan that was reviewed in April 2019.

3) Are the issues resolved from the Ofsted? We won’t find out until the next Ofsted.

4) They need to review the newest plan to agree to meet need. There are things on the old plan that they can’t meet.

5) They work on a reward and consequence system. That doesn’t always work with Charlie and can lead to him having a meltdown when he doesn’t fully understand the consequences.

So as you can see, I have some big reservations regarding this placement. I’m still holding out for HG, (an independent specialist school) and I’m yet to hear back from Linnet regarding their Ashby site as that may be suitable for him. However, their site in Castle Gresley is definitely not suitable for him. And then the Roaches, which was a school I saw up in Staffordshire near Leek right in the Peak District, they have a new school opening in either Beeston or Breaston. I’m not sure which! Either way it’s a lot closer..

I’m still on the social media ban. And it’s going really well, I’m feeling very detoxed from it, and I like where my head space is at. Once, my University course is complete, or as close to and the pressure is off then I will most definitely be back on the social media grid. But probably just in this capacity rather than my personal pages.

I’m always working on stuff in the background so I’m hopeful this site will be up and launched soon!! Especially when I’ve piled together enough FREE resources and information so that we’re able to help people in the capacity that I want to. The aim of this site was always to be a self referral information site so people can dip in and out to the bits that they feel will be most helpful to them.

Looking forward to be back in the swing of things!

Georgina x

We survived Alton Towers... Just!

This blog post was written on 20/2/2020

Well, it’s half term. And there’s quite a lot to say! The Friday that the kids broke up, we had an assessment with HG with their clinical psychologist. They need now to go back to their referral and admission team and get back to me on an answer. I have had a reply of the LA from their response to the complaint I made on the progress of Charlie’s case and although they have apologised, and admitted fault, they still have some work to do in my opinion before they get it right. I am seeing HH again on the 24th February and have tried to contact Linnet Learning Centre to arrange a visit to their Ashby site.

So anyway, Alton Towers! I found this incredible deal online for half term. It was only £170 for the 4 of us (me, Charlie, his brother and his sister) and that was a night in the hotel, shark bait reef (sea life centre), extraordinary golf, admission to the waterpark (normally £62 for us all) breakfast, and all the entertainment. It was worth the money. However, very tiring for the little man. We didn’t manage to finish the golf. And we didn’t do any of the entertainment. But a place like Alton Towers is such a secure environment that the older kids were able to take themselves off especially when the meltdowns occurred. Also, if they wanted to watch the entertainment (unfortunately we chose the Princess takeover hotel, so they didn’t want to) they were able to wander freely around the hotels. Which was a great way of removing themselves from the environment if things got too tough for Charlie.

The waterpark was definitely the best part. Charlie loves the water, it’s a sensory thing. And it really is one of his favourite pastimes and his happy place for sure. And I’m so thankful that we have it so close, and that now we are able to jump in the car and just go! I’ve been driving less than a year, and activities like this is definitely worth all the stress of learning to drive. As it makes opportunities like this so much easier! I’ve learnt over the years, to follow Charlie’s lead on things like holidays, days out etc. His siblings don’t always understand and appreciate it. But it is in all of our interests if we follow a Charlie led trip as it does really make a difference.

I will do more blogs around holidays and days out, because I feel like it is important and that it may give some other families hope, confidence, support and guidance at doing trips like ours and hopefully to be more successful around it. As that is what is important that we give children, and adults with additional needs all the chances of becoming inclusive as we can.

Will definitely consider Alton Towers again, and hopefully when there is an inset day we may pop over there for the theme park. As it is always a much better experience when it’s quieter and we don’t need to queue as long. We went to Drayton Manor a couple of summers ago and it was an absolute nightmare! Never again in the holidays.

It is great though that more theme parks and attractions have so much accessibility and can adapt to the needs of people with additional needs and need a different level of service. Hopefully the rest of our half term will be just as good.

Georgina x

Social Media Detox

This blog post was written on 10/2/2020

I am using the initials of the schools in order to protect the identity and security for both Charlie and the school’s as this is a public space.

I’m currently taking some time off social media, sometimes it can magnify problems that actually, are manageable but seem overwhelming. So it seems a great idea right now, as we have so much going on to give social media a bit of a breather, and hopefully then when I am back I’ll have more of a positive take on things.

As for updates, we have an assessment with HG school on the 14th February, that is to see the Clinical Psychologist. That is their first steps to offering a placement, a series of assessments. I went to view the school in November, loved it! Wanted to cry on the walk around, was there for 3.5 hours! So asked plenty of questions. Then they offered an assessment date in January however, Charlie was due to go on a residential trip overnight to Lea Green, so I had to cancel it. Then, the trip was an absolute nightmare, he lasted half a day before I was called to go and pick him up!!!

It’s been the longest 3 weeks, waiting for a new assessment date, but I’m happy to say it will be the 14th and we will go from there. I am also seeing HH again on the 24th February, so that I can ask them details of the current Ofsted report. And also, the other school Linnet Learning Centre, I’d actually need to go and see their new building in Ashby which is where Charlie would go.

There’s always so much more to organise, when it comes to viewing schools, checking the Ofsted, viewing the teaching methods, whether it’s a way Charlie will learn, checking the space. Finding out about their restraint policy, and their rewards and sanctions policies. So far, HG has come out on top with everything, it is everything I’ve ever wanted in a school for Charlie.

We still have a very long way to go, more battles, and social media is a massive distraction I can definitely do without.

Georgina x

We have a name change!

This blog post was written on 6/2/2020

As I’m aware that this page may throw itself out in the public domain, as I hope it does!! I didn’t want anything that may damage Charlie’s already fragile self esteem. I think the previous name was a little bit personal and focused on him as a person, rather than the message I am trying to put across.

That message is Advocating. I am advocating for Charlie, but not only Charlie, for everyone that doesn’t have a voice and needs a voice. I’m advocating because I know how to use a social network platform in the correct way, and I’m advocating for the hundreds of families out there like mine that need to hear it, to empower them.

I’m pretty happy with this change. It’s a positive change.

Georgina x

So the LA may have suggested a school..... Hold on tight....

This blog post was written on 6/2/2020

So, as the battle continues to get Charlie an education provision, and the extreme length of time this has taken to implement things may actually be moving. On Tuesday, after not receiving a reply from the complaint I put in the week before (apparently they have 10 days to respond which will be this Friday, tomorrow) I sent quite a strongly worded email with a 4 page document outlining the principles I feel have been neglected from the SEND Code of Practice.

Low and behold, the caseworker emailed me yesterday offering a school place at a school I had previously visited last May, 2019. The school had previously suggested that they couldn’t meet need, and this is going on an old plan that didn’t have the magic touch of Mrs H. So I will be interested to know whether or not they are still able to meet need should the new plan be unveiled. This school was also put into special measures as “requires improvement” on their last Ofsted visit. My ultimate piece of advice is to always check the latest Ofsted report on the school.

Our local LA have policies in place to prevent a child going to a setting that is currently in special measures, so it will be also interesting to find out what was said at the panel meeting as I’m not too sure it fits into their policy remit to send a child there.

This school is also an hour’s drive away, so over the threshold of the LA’s recommendation of 45 minutes drive away, Charlie doesn’t access the transport provided as the anxiety levels are too high for him to travel with a stranger, therefore it is on me to transport him every day. Although the school offers residential placements, it is not appropriate for Charlie as he would not cope with the separation anxieties that come with sleeping away from home. I challenge anyone to attempt to make Charlie sleep elsewhere, it won’t happen the child is too attached to me haha!

The school also only goes up to age 13, year group 9 so after that we have to start this whole process all over again. Which I’m definitely not thrilled about. However, by then I’m hoping I will have had 5 more years of experience, knowledge and attending various information courses in order to make sure I can fight that battle too.

There are definitely more cons than pros for this school, however, as promised I will go and view the school in order to challenge the points I need.

I will keep you posted!!

Georgina x

Who needs sleep anyway?

This blog post was written on 5/2/2020

Tonight we are trialling the Red Light! One of the first early indicators that there was something different about Charlie was the sleep. He was exclusively breastfed, (the only one of three that did) which ultimately meant that he was attached to me day and night quite literally. He was weaned at 6.5 months, no magic advise I’m afraid, just a tired momma that went on a night out and the next day knew I couldn’t feed! And he literally just weaned. Anyway, he slept in bed with me until he was around 4.5 years old, trying to settle him on his own was a nightmare, and if I’m honest there was no real need for him to sleep in his own bed. (This was partly due to space as well, we had a tough living arrangement for a while when the children’s father left).

Anyway, school was soon approaching, so I began the necessary moves to ensure independent sleeping. This was HORRIFIC!! No matter how hard I tried, Charlie would not settle on his own, he was up and down, and there was numerous excuses, he needed to touch me at every opportunity, He needed the physical touch, he was exhausting. Bedtime would start at 8pm and would not finish until perhaps 11pm or midnight, it was hours of the “settling” period. And if I thought once he was asleep, I could go to sleep, I was wrong! He then woke, continuously throughout the night, desperately needing to touch/be near me.

I was working for the NHS at the time, doing a role which meant working from 8am until 6pm throughout the week, it was extremely exhausting trying to manage that and get the kids up and out the house, with having little or no sleep, and whatever sleep there was it was broken and not of any good quality.

We battled on, trying various different strategies, bedtime routines and implementing therapies to get him to settle. None have been groundbreaking unfortunately. Although, ones that have stuck have been making sure the toilet has been used, a drink of milk before bed, limit of electronics by having a family card game before bed. This is either Uno or Top Trumps which work for us. Bedtime is always 8pm.

Once he was diagnosed, we were prescribed melatonin, however, Charlie being Charlie was the 1 out of 100 that developed frightening side effects, this being nightmares and hallucinations so we were unable to continue on the prescription as I would much rather suffer than Charlie experience that. And, I gave up my career to become his full time carer anyway.

In December 2019 I was fortunate enough to go on a Positive Sleep Habits course with the Clinical Psychologist from the Children’s Hospital at Royal Derby Hospital. DISCLAIMER: I am not a professional, always seek professional advice when changing your child’s care plan. I was lucky enough to go as a plus one, with Miss S (if you have read previous blogs, Miss S is one of the guardian angels). There were a few hints and tips that they gave us that I will share with you now.

• Use a weighted blanket - this is only effective for the first 20 minutes.

• Switch to a red light in the bedroom.

• Limit screen time, 2 hours before bed.

• If there is a blue light filter on the electronics, switch it on.

• Talk to your child about their day - give them chance to tell you of any struggles/worries they have

• Use relaxation and yoga

• Eat a tryptophan rich diet - These are foods that contain melatonin so the body is getting it in the day.

• Tart Cherry Juice 200mls, available from Holland and Barrett.

We have yet to try the foods and cherry juice, and unfortunately for us limiting screen time is never easy. However, we have the weighted blanket, regularly talk about our days, always chat about any concerns and definitely do the yoga!

These strategies may not work for everyone. It is important to seek professional advice if you have any concerns, There are lots of books and resources available also. Changing old habits and introducing new ones is always tough, so please don’t give up even if you give in.

Georgina x

There are angels that walk among us.

This blog post was written on 4/2/2020

An EHCP (Education and Healthcare Plan) is there to assist your SEN child through childhood with the correct services and provision in order to safeguard them and hope that they achieve their full potential. It is written by using the guidelines of the SEND Code of Practice, a 292 page document with principles that all services working with SEN children should adhere to. Tonight I took apart the 292 pages, bit by bit and wrote a 4 page long complaint outlining each and every principle that I personally feel has failed Charlie. Whether it be health or education.

The EHCP has been in draft version for around 10 months now, and is not legal. The legalities come from the legal framework within Children and Families Act 2014, which then makes up the guidelines given to the SEND Code of Practice.

I knew nothing about the legalities of SEND caselaw and just bumbled around with this shockingly written EHCP which was neither quantified or specified, and just accepted it. Then the angels appeared. 2 lovely ladies by the names of Mrs H and Miss S and between them, they have opened up dialogues to conversations that I never thought I could have, therapies that I didn’t even realise we were allowed, a plan that I didn’t even know could of existed. And above all protection for a provision for my darling boy who needs more than anything the right educational setting and provision to enable him to live a life as assessable as he can. There should be no barriers to learning and there should be support networks to avert a crisis from happening.

For Mrs H and Miss S I am eternally grateful as without them, I would definitely not continued to fight for as long as I have, each and every time I was almost at the point of giving up, in they came and picked me up and supported me to continue to fight, and for that I am truly grateful.

I hope you both read this one day and realise how special you are.

Georgina x

Schools, Schools, Schools.........

This blog post was written on 3/2/2020

Today, I went to visit a therapeutic school. It is so far, perhaps the 17th school I have visited. I have been all over Derby City, Derbyshire, Staffordshire, Nottinghamshire and Leicestershire in a bid to secure Charlie a placement that will suit his individual learning needs. It’s been exhausting, mentally draining, and the list of schools where I have spoken to SENCO and the heads of the schools is even longer! Our journey to get the right school placement has definitely taken it’s toll and it honestly shouldn't be that hard. I’ve now got to the stage where I’ve forgotten which school have said yes/no and their reasons why. Which has to be the most crucial bit, knowing why they feel they can not meet the needs of a child like Charlie.

At present, there are 2 schools in the pipeline, both independent schools, both with a price tag of over £70k a year, does my child need this? Yes! How do I know? Evidence! We didn’t get to this point without a lot of trial and error, and a lot of investigating. However, I feel like I’m battling a brick wall at the moment.

This list of schools is endless, and I have seen all schools, from Mainstream schools with Enhanced Resource Units, Special Schools, Schools for Autism and Independent Specialist Schools. And so far, not one has said they are able to meet my little boy’s needs. I have got a spreadsheet of all the schools and alternative provisions I have identified myself, I am happy to pass this along, please get in touch.

I will keep you updated on our struggles.

Georgina x

When school got too much, who will help us now?

This blog post was written 1/2/2020

So, here we are, 2 and a half years on from entering the Pupil Referral Unit (who have been fantastic btw). At a point, where school is no longer the happy safe place, and school refusal is actually the norm now. Since the start of term, after Christmas break, Charlie has barely attended for a week. In fact, I can’t actually remember the last time he did a full week or when he did full time. We still have no final Educational Healthcare Plan, and we have no provision. What was promised to us, just a 6 month stint in the PRU and then a new school will be found. A new mainstream school was found, but unfortunately the plan wasn’t good enough to meet his needs, and we ended up with another permanent exclusion! Two by the age of 7! That shouldn’t happen to any child. The base line is, not enough was done and waiting times were too long, and Charlie was failed. And that should not happen, but who can I hold responsible for it? What is the plan of action? In times of these crisis’s I turn into momzilla - SEN momzilla, and I make sure everyone is aware of our difficulties. Last week it was emailing the head of the SEND department at our local authority, and this week already I have put in a formal complaint against the LA and written a report for the MP asking for support in our situation. I’m not sure how much help it will be, but I refuse to just sit back and not fight or hold services accountable.

I know, it’s lack of provision and an extended wait time that has lead us here, but what I want to know, is what is going to happen now? Who is going to help us? And what is the plan going forward? But alas, I have had zero communication and feedback from the LA and I am still no wiser on any plan, and with the PRU now breaking down too, what now? Where does this leave my 8 year old?

This morning I had a phone call off the Speech and Language therapy team. They would like to deliver his therapy at home, as he is not in school. Fingers crossed this is a positive move and Charlie engages, as he doesn’t tend to tolerate strangers in our home, yet another difficulty of navigating through SEN life and ASD parenting.

Georgina x

The Beginning

This blog post was written on 28/1/2020

There’s Something About Charlie - The Beginning.

Charlie is the youngest of three children. His brother and sister are neurotypical, but there was always something about Charlie. He was the only one of my children to exclusively breast feed and to co-sleep with me, I literally could not put him down. He was very clingy and didn’t always respond to his name, as a result he had his hearing tested three times. He was challenging, and traditional discipline methods simply did not work! He didn’t settle anywhere, and everyone struggled to keep the balance of keeping him happy and trying to avoid the meltdowns, running off and physical assaults, how little we knew back then!

At age 3 we were given a family support worker, who assured me I was doing a great job and that he would catch up in time and develop normally. She did some amazing work with us, and at the time I was working full time and juggling life. I cut my hours down to 22.5 so that I could devote more time to Charlie’s needs and he was between me, his childminder and his father and we all seemed to meet his needs.

Charlie started the local mainstream primary school in September 2016. This was a school both my older children had attended. He was clingy, and difficult to leave, in the evenings on picking him up there seemed to always be an issue, mainly from other classmates being physical, Charlie really struggled in the environment which could only be described as “chaotic” and this resulted in me removing him, as the physical attacks on me were daily and so was the running off and hiding. Life was very traumatic, for all of us, him, me and his siblings.

I moved him to another local mainstream primary school in February 2017. Unfortunately, this move was very traumatic for Charlie and resulted in him having numerous days off due to school refusal, when he was there he didn’t engage and spent a lot of time in the inclusion officer’s office. He was physically restrained and by May 2017 they had made the decision to involve the local Pupil Referral Unit (PRU) for advice. It was at this point that our previous family support worker came back, I was struggling with work and my own health, I couldn’t hold down my job and ended up with appendicitis while off sick from work leading to complications from previous surgeries. The family support worker encouraged me to apply for Disability Living Allowance, and we were successful, this meant I was able to resign from my job (a much loved job in the NHS with 8 years of service) and claim carers allowance to ensure Charlie was fully cared for and his needs were met at home at least. She also arranged for us to go on the referral pathway for Autistic Spectrum Disorder in April 2017.

After the permanent exclusion, he went to the PRU and we applied for an Educational Healthcare Plan (EHCP) with the view of Charlie going back into mainstream education supported by the plan. I was told initially he would only be in the PRU for 6 months. However, after a LOT of preparation, discussions and adjustments, the school, another local primary school (3rd in 2 years) was unable to cope and by April 2019 after just 4 months he was permanently excluded again. And bounced straight back into the PRU.

In October 2019 after a 2.5year wait, Charlie was finally diagnosed with ASD. In May 2018 I had a private assessment done to diagnose Charlie with Sensory Processing Disorder (SPD) he also struggles with a learning difficulty, speech and language, anxiety, post traumatic stress disorder (PTSD) and challenging behaviour.

So far, we are without a provision, I have no respite. Charlie no longer sees his father, as he was inconsistent at contacts and despite best efforts, contact broke down several times in the space of a few months and he was unable to give Charlie the routine and consistency that he needs. He needs this as he struggles with change. This is part of his ASD and his needs need to be met in every environment to ensure he doesn’t meltdown and lead to risky and unsafe behaviour. This of course means I have no break other than school. His plan isn’t finalised even at January 2020, we have no idea what the future holds and how we will manage.

I hope you enjoy our journey and find some help and support within these pages

Georgina x